I walk in the room and find Ammon like this. I find myself standing there staring at him for a long time. He doesn't notice me standing there. I lean against the door frame and take in this beautiful picture of a pure and simple and beautiful being. I find myself staring at him all the time. He amazes me more with his incredible abilities than disabilities. I am so grateful to Heavenly Father for sending us an angel.

Ammon's "voice"

We are finally in the works of getting a communication board for Ammon. Last week I met with people from the district who had already come and observed Ammon in his classroom and felt he would benefit from a board for both at school and at home. They are fairly small boards with only  6 options for speaking a desired phrase. For example one board will be prepared for when he wants to eat. He pushes the picture of a snack (cracker) and it speaks! "I want a snack.' We tried this at school with him and he got the hang of it really quick. Every time he pushed it he was handed a cracker. I'm interested to see if he will use it for other things like..."I'm tired." or "I'm hurt" The board has sheets with pictures that slide into it. Then there is the option to record a voice and make a statement for the picture. They showed me how to use it. I will be working with the speech therapist to make as many sheets as we want/need. Really fun! She asked me to not record my voice but a child's voice for  "Ammon's voice." I love that idea! 

Sunday night I was attempting to settle him down and get him to sleep. I tried  telling him a story. The story of his birth and how I felt when I held him for the first time. He avoids eye contact like the plague and rolls back and forth as I speak. I want a moment in his world so desperately.  I started singing to him. He stopped and finally looked up at me into my eyes. Why is language such a barrier? What does it sound like in his mind?  Music is the only way I feel that language  really makes sense to him. I stopped and he lay there gazing at me and then made an attempt to tell me something in his jabber. I was ecstatic to hear him attempt to communicate and pretended to understand everything he was "saying". I am hanging on to hope that this communication board will empower him with a  voice.

Lately

Doesn't Occupational Therapy look boring and rigorous? So much has been happening lately. Last week Ammon had an MRI done on his spine to see if he has a tethered spinal chord. Everything was normal...too bad the experience of having an MRI isn't normal. Watching your child go into an induced sleep isn't the most calming experience. Seems like it would be, but it's rather unnerving. I can handle my boys coming to me with all kinds of scrapes and mishaps but to see Ammon lying there lifeless honestly made my legs shake.

This Wednesday we get to meet with Dr. Opitz at the University of Utah. The real name of FG syndrome is Opitz-Kaveggia syndrome. When I called to make a follow-up appointment with Ammon's geneticist, Dr. Kerry, the receptionist said "Well, we can get you in on...April 3." The appointments are always so far out and that is for follow-up appointments. To schedule an evaluation it is usually more than a year out.
I'm thinking one of our children should seriously consider going into genetics! I was going to write to Dr. Opitz and ask him some questions about Ammon, I have read other letters on-line to him from other mothers with children with fg and he was very helpful. While I was on the phone with the receptionist I asked if Dr. Opitz took patients and she regrettably said no. Then I mentioned my son may have fg syndrome and she responded that he DOES take fg syndrome patients! I listened "He can see your son (I'm thinking in my head February? March?) ...next Wednesday morning" Great!! We're there. I wrote our neurologist, Dr. Kerr, and asked her more information about Ammon's brain MRI from a few years ago. I wanted to know if she could see his corpus callosum. A side note... the other night I was feeling a bit overwhelmed with trying to keep up with the long list of my children's needs and schedules. I was venting to Andrew and gave him the long list of happenings and at at the end said "and with all that I've got to figure out if Ammon even has a corpus callosum!!" Those are night thoughts you give to your husband lathered with drama before you fall into a comatose sleep. The corpus callosum is the part of your brain that signals left and right brain communication. Dr. Kerr kindly wrote back and said she went back and looked at the scan and reported all looked well, but he did have enlarged ventricles which may be compatible to the syndrome. So there we have it. I just wanted to gather all the information I could before meeting with Dr. Opitz. (I can't wait!)

Details

Carrying Ammon out of pre-school is probably one of  the happiest times of my day. As soon as he spots me he runs into my arms and YELLS as loud as he can. The other kids are used to it by now. While I am gathering his backpack and coat (with Ammon glued to my person) Loretta will come and tell me something Ammon did new that day. I love that about her. Last Thursday, I was buckling Ammon in his car seat and turned around and Linda was standing there. She smiled and said "I just had to come out and tell you that Ammon noticed my bangs today... he kept reaching out and touching my hair and even tried to say hair."She also told me that she has had two different dreams about Ammon. Both of which he was talking in. I told her I have dreams like that all the time.


Sam wants Ammon to talk to him SO BAD. Tonight while Ammon was in the tub, Sam came up to him and knelt by the him and said "Hi Ammon! Tomorrow is Thanksgiving!! Are you so excited?"
Ammon just kind of looked up at him and carried on with playing letters. I was grateful to Sam for trying to engage him  and then not getting discouraged when he didnt get a response. He prays for him every night that he will learn to talk. He will someday.

Could it be?

I have more inspiration come to me while washing dishes and running than almost anywhere else. Why is that? One night in particular, a few weeks ago, I had just finished washing dishes and sat down. The thought came to me to google FG syndrome. It happened to be on the list of possible syndromes the geneticist had in mind as he evaluated Ammon last September. (We haven't thought about syndromes for  a long while. Our insurance has been back and forth over the last year with Andy's job change and we have been putting off tests. And actually our insurance with Riser wouldnt cover it anyway. ) The number one syndrome he  suggested was Fragile-X. As I read about it, I had the distinct feeling that this was NOT what Ammon has.  I hadn't even read about FG syndrome. This year has been very different. A lot of acceptance, healing, learning and yes...even joy! Not like the past 2 years of exhausting every avenue to 'cure' him  and walking the dead end road of asking 'why? why is this happening?' I used to google all of his symptoms. Most of what would come up was the classic autism tale. As I sat there and read sites pertaining to FG syndrome I couldn't believe what I discovered. Ammon  fits most of the symptoms...Macrocephaly(abnormally large head), small low set ears, wider spread eyes(this all sounds so mean-we love his little self) profound developmental delays, pointed fingers, hypotonia, cronic constipation ( because of malformations in that area).  I was flooded with emotions. A myriad really.  Is it strange that I am hoping that my child has a syndrome?Not just looking back on my pregnancy with him and critiquing every fine detail...always wondering if it was something I could have prevented.


The next day I called Primary Children's Hospital and talked with a lovely person named Tammy. For what ever reason she took it upon herself to take our case and run with it. She even gave me her personal number so I could reach her directly. By the next day she had re-written a request to our new insurance and spoke with our geneticist, Dr. Kerry ( who is about 80 years old and fascinating to talk with). He was confident that our insurance would cover this expensive micro-ray test. She told me to cross our fingers and we would hear back in 2-3weeks. O.K.!! Two days later she called me with excitement in her voice. "Guess what!!? We have heard back and they approved it!!" She said , in all the time she has worked there ( who knows maybe its only been a month) she has never seen an approval that fast. HOT DOG! Last thursday, November 18th, we took him to the lab at Utah Valley and they drew his blood. Now we are waiting. I keep telling myself...either way it will still be our little angel-boy Ammon, but it would be so very nice to know.

While washing dishes I looked up to this sight. So precious. I hurried and grabbed the camera and I'm glad that I did. If only I could put sound to this. You haven't heard anything quite as sweet until you have heard Ammon say "WEEEEEEE!!" I'll try and record it next time with Andy's iphone and share. It's too cute to pass up.

'

It's that time again. Summer passed too quickly. Pre-school again. I want him right here. In my arms.
I live for him running up to me with that look. Only I know it. Heck, at BYU they make note of every time he makes eye contact with them. I'm the lucky one. Then I'll squeeze him and say I LOOOOve and hesitate......sometimes I'll score a "You " under his breath. He use to play this endearing game with me every night when I would lay him down for sleep. I would whisper I LOVE....and he would say U back. But it disappeared like so many other things have. So when he remembers I always have to stop myself from crying like a baby.

His pre-school open house is tomorrow morning. They have a new trailer this year and Linda wanted him to come and get a feel for his new environment.(Sounds like a tiger or something.) I'm secretly curious to see if he remembers any of them. On a side note...Linda wrote to me and told me Aersta is doing her school rotation at Northridge.Lucky us! Well, Ammon anyway.